Time for a proper update

Last we spoke I was post thoracentesis and home with a Z-pack. I had that thora on a Friday and by Monday I was running a fever and experiencing chills. Jess wanted me to go to the ER but I resisted. We made a deal that if my temperature rose, in I would go. When it hit 101 that evening I relented. Per Jess’s instructions, I was not to drive myself

Well, my fabulous landlords rose to the occasion and ferried me to MGH—complete with a blanket and a hot water bottle. They also offered to take care of Kumo–for what would turn out to be an extended stay.

The ER. First they took my temp with one of those little wand-y things, which said I had no fever. It would take another 36 hours for someone to stick a digital thermometer in my mouth and for all to realize that I still had a fever of 101+. If you have a wand-y thing (they screen for COVID with those), throw it out. Piece of shit.

As an oncology patient, I was paid a certain degree of deference. Which meant my own private glass cubicle. But I, like everyone else, had a gurney and no pillow.

Going to the bathroom was a trip. The further you went down the hall, the more it resembled skid row, with gurneys lining the halls (addicts, drunks, psych evals) and people sitting in chairs like hall monitors. Which they essentially were.

‘It would be my unfortune (not a word, but let’s make it one) to spend almost 24 hours in that ER. The nursing staff was exemplary. But the slice of humanity—it’s hard y’all. I saw some guy’s junk (I was on the phone with my friend Annie who said ‘don’t tell a lesbian that!). I was bombarded by bells. Some woman came in screaming ‘don’t you shoot me with that fucking epipen–you killed my kid, I’m going to sue you all’ and so on. Ten minutes later she was quiet and when my nurse came in I commented on that fact. ‘She had some help’ he said. ‘And that’s what she was screaming about’ I replied to which he responded ‘And that’s what happens when you spit on somebody.’

Another of my fellows came in with a police escort of at least seven officers. A big city emergency room is, quite simply, a portal to hell.

When I was admitted, it was to a room with a roommate. In short, a hospital is no place to heal.

However, my situation was such that I needed to be stabilized. A complex cocktail of intravenous antibiotics. A second thoracentesis. Discussion as to the fact that if my fever did not abate, we might need to attribute it to my cancer—which remained so obscured by pneumonia and the pleural effusion—it could not be assessed.

It was a scary time. A time of difficult possibilities and discussion around whether or not these were in fact probabilities.

And of course, the demands of life continued. I needed to vacate my studio. Stat. And now physically impossible. I called Annie–said I needed a project manager. She—without hesitation—agreed. I then sent out an email to some of my closest friends and my youngest son. While I was in hospital, Annie drove two hours to my house, got the key to my apartment from my landlord, and then met my friend Marc at my studio to start packing. The next day they were joined by Brian, Chi and Susan.

My son Peter had the task of bringing me home from the hospital on Saturday, but on Sunday he joined those assembled. And this marvelous crew both packed up and moved most of the contents of my studio. Unflipping believable.

Of course, there were other matters to attend to. Melinda and Diane tag teamed. Once I was released, Melinda and our friend Amy came to my house to cook but also to help me tie up some important loose ends. My will. ( a visit to the notary). Taxes paid. A spread sheet created for my bills and passwords. Power of attorney to Melinda–as well as giving her access to my bank accounts. And then Melinda went above and beyond–looping in with my financial advisor to help me manage assets.

There are still things to attend to. Copies of keys, arrangements as to how I’d prefer to die and where my body shall go (research) once I do.

Sobering. This head on confrontation with mortality. But also incredibly comforting–wrapping things up. Of course, I still hope this is all a little premature. However, my eyes are wide open. Stage IV lung cancer, a massive pleural effusion and pneumonia are all indicators of a body that is struggling. Tomorrow I have another chest CT and will meet with Jess. It is likely my left lung will be drained again and possible that a PleurX catheter will have to be installed. Once it’s a tad drier in there, we can figure out what’s been going on with my cancer. And make some choices as to how to move forward.

Forward 🙂

xo

21 responses to “Time for a proper update

  1. Linnea – you are amazing – through and through.
    We love you so deeply. And walking with you, every step of the way.
    ❤ Melinda

  2. My dear friend, we are all there with you, surrounding your with our strong strong love. 😘

  3. Oh Linnea! I wish there were a different setting than that big city hospital. Your description sounds like a tv drama scene. You shouldn’t have to deal with that in real life.

    You’re circle of friends/family is amazing. It’s a relief to know they are there for you physically on a moments notice while all the others, like me, are too far away to help with anything other than well wishes and sending positive thoughts to the universe. And I’m sending plenty to turn this bitch around, get you feeling better and in the right direction, my friend.
    I love you–Lisa

  4. “You may have cancer, BUT you are a beautiful and amazing writer.” tues, I know it is a non sequitur. But it’s what I’m thinking. I do so wish that all you had to do was write about easy and happy things, not ERs and medical challenges, but we are in the reality business, so, no dice. I think of you often, with lots of love, and hope! Hugs.

  5. DONNA GIARDINA

    Sending you hope and strength
    from Boulder, CO.

  6. Marie Hazelton

    💖💖

  7. We are continuing to pray for you and send up all the tough love we can possibly do! You are one brave woman and a beacon for fighting and surviving to all!!😘😘

  8. Kristen Aliotti

    My comments (e.g. above) always come up with the name of the website I was trying to create for my late father’s photography (Erv Miller Photography). And I can’t seem to post my message properly to be from me. But anyway, I just want to send you my thoughts and love. I have been following you for many years, and I appreciate your writing, your courage, your brilliance. And I am wishing you the very best.

  9. ✊🏼❤️Forward always 👈🏼

  10. ✊🏼❤️Forward 👈🏼

  11. You are in my thoughts lioness.

    On Wed, Jul 14, 2021 at 9:55 PM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” Last we spoke I was post thoracentesis and home with a > Z-pack. I had that thora on a Friday and by Monday I was running a fever > and experiencing chills. Jess wanted me to go to the ER but I resisted. We > made a deal that if my temperature rose, in I w” >

  12. Dear Linnea

    I am so sad reading every word of this twice this morning.  So glad you had a good team of people helping you with vacating and then doing all of the things needing attended to.  You are in my prayers this morning. And always. Whatever the outcome of this I pray to God for mercy on you. I was talking to my husband kent at 6 this morning, about you.  My sister in law’s dad has late stage pancreatic. He lives in MI and the only trial for him is in AZ  :(What all of us w/ cancer have to deal with is beyond bearable. But you have been fortunate to have such great care, although not a block over from your home.  i can’t imagine going thru this alone. Your psyche and body have been medically tortured in the name of extending your life. We watched a TED talk last night, which made me think of you again! It was about stress given by Kelly McGonigal. You’ve been stressed more than any human i know. I pray for you love, light, peace. God bless you my friend. Miracles happen! I know it’s difficult staying positive during such angst and pain.  With love, Patty 

  13. Linnea, I’m so far away. Wish i could come.see you. Wish i could just give you a hug. Youre teaching us.all so much about life. ❤

  14. Sending love 💗

  15. You are loved and I’m proud to call you my friend. I wish so badly that I lived closer to help you in any way that I could.

  16. Dear Linnea, I am so saddened to hear of your current state of health issues. It all sounds so familiar. Peter dreaded having the Pleurex installed, because he was told NO swimming! But he was careful, and would float for hours reading with Duke, our chihuahua, sitting on the end of the raft with him. It was a blessing. I could drain the fluid in his lung at home every few days, instead of needing to hastily get it drained before a weekend, etc. I remember being afraid to do it. That maybe I would do something wrong and it would get infected, etc. But, I became a pro at getting the plastic seal on over the shunt without any wrinkles. It brought him comfort and made me feel like I was a good caregiver!
    I was in Boston recently at Yawkey for my own issues in 7E, not B. Your favorite doc set me up and even paid me a visit. It was so nice to see her. She is a goddess!
    I’m sure you don’t remember, but I first met you there in the hall when they had there Tuesday coffee day. Peter had an appt with Dr. Shaw. I have been reading your blog for at least six years. I am always thinking of you, praying for your comfort and the right cocktail to get you through another year. Sending love. Your friend from afar, Jon in Rochester.

  17. linnea…I’m now 73…and as you know my husband is a doc at MGH…he’s seen it all….but I think you still have some hope and my heart goes out to you….It was a privilege to work with you at TEDx talks and I hope you will do more once this gets under control….again, I have hope, always.
    Best to you…..Pam Winters

  18. Forward is the only way to go – Bon courage mon amie
    xx

  19. Linnea, we don’t know one another but we are fellow travelers in the world of lung cancer, MGH, writing, family, love, hope and, at times, despair. Praying for new opportunities for you, for health, for healing.

  20. My favorite lines from poet Amanda Gorman say, “For there is always light. If only we are brave enough to see it. If only we are brave enough to be it.” You, my friend, have been a brilliant and shining light for yourself, the people you love, and others like me who don’t know you personally but feel as if we do because of your profound influence. I’m praying for our miracles – you deserve a basket full of them.

Leave a Reply to pam winters Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s